Stem Cell Transplant Is It Worth It ??

Well things never stop, or even slow down... cancer never sleeps !! Cancer seems to have a mission and a scary one. My brother has been on velcade, dex,thalidimide treatment, His cancer was extremely vigourous as DX in October and by December  his myeloma load was 90% with IGg level of 9500 these numbers are off the charts and we are not sure how he survived to the first of the year. Doctors only said "the human body is a miracle" well I guess it is !! After only 12 treatments on Vel-dex-thal his numbers came down to 10%myeloma load and IGg is at 985 Now they want to do a stem cell transplant ASAP.My brother is terrified and after been given a few months of survival in october to stem cell transplant in march we may attribute this to Prayer,God and support in a positive way.People speak of "being positive" I understand now what that means. After being run through a wringer you just seem to find some superpower striength!!! and never quit !  miracles really do happen they really do !! After living my life (48 years) and becoming quite successful I now realize that while climbing this ladder of success that the ladder was against the wrong wall. I love my brother and I would "trade" all my posessions for just one more day with him.Life is a gift yes a gift .We should not have to have to have extreme grief  to see this but sometimes it just works that way. I have learned so much in such a short time, Too bad I had to learn it this way.Love transcends it guides and provides Love each other as if it were the last time you will see them....... Love.

 Hi: Select the Multiple myeloma page, scroll back to Feb 1 and there is a whole discussion on  Stem cells pro and cons so you might want to read that. Not everyone agreed with me but that is what conversations are for and just for the record I DID not say I am against stem cell I just cited my personal experience with people I knew, and everyone has the right to make their own decisions.. Take care MMS

On 2/26/2008 zazu1234 wrote:

Well things never stop, or even slow down... cancer never sleeps !! Cancer seems to have a mission and a scary one. My brother has been on velcade, dex,thalidimide treatment, His cancer was extremely vigourous as DX in October and by December  his myeloma load was 90% with IGg level of 9500 these numbers are off the charts and we are not sure how he survived to the first of the year. Doctors only said "the human body is a miracle" well I guess it is !! After only 12 treatments on Vel-dex-thal his numbers came down to 10%myeloma load and IGg is at 985 Now they want to do a stem cell transplant ASAP.My brother is terrified and after been given a few months of survival in october to stem cell transplant in march we may attribute this to Prayer,God and support in a positive way.People speak of "being positive" I understand now what that means. After being run through a wringer you just seem to find some superpower striength!!! and never quit !  miracles really do happen they really do !! After living my life (48 years) and becoming quite successful I now realize that while climbing this ladder of success that the ladder was against the wrong wall. I love my brother and I would "trade" all my posessions for just one more day with him.Life is a gift yes a gift .We should not have to have to have extreme grief  to see this but sometimes it just works that way. I have learned so much in such a short time, Too bad I had to learn it this way.Love transcends it guides and provides Love each other as if it were the last time you will see them....... Love.

 

Good Evening Zazu;

"His cancer was extremely vigourous as DX in October and by December  his myeloma load was 90% with IGg level of 9500 these numbers are off the charts and we are not sure how he survived to the first of the year. Doctors only said "the human body is a miracle" well I guess it is !! After only 12 treatments on Vel-dex-thal his numbers came down to 10%myeloma load and IGg is at 985 Now they want to do a stem cell transplant ASAP."

Great news about your brother!

If I recall one of your other posts the Drs. were talking about a tandem transplant. Is this still the Tx. plan?

I believe MMS has guided you in the right direction. There are many topics in the archives relating to transplants. Do your research and become as informed as possible so you may both choose the best path for his recovery!

Take care;

Kevin

Well Kevin "tandem" Tandem could be different things in our case "tandem" means transplant of stem cells from himself and a sibling together His cancer is so vigorous that Yale believes it will return quickly therefore sibling stem cells could identify Myeloma and destroy it. The problem is that I am not a HLA match and we have only a sister who is being typed at this time. We are hopeful. The chance of HLA match is only 25%. The most amazing thing is at Yale. They have a super computer this computer has "linked" with my brother it was connected by a IV.his breathing was connected and his urine was collected It even used a special camera to watch his heart flow and many other functions.......after about 1/2 hour it learned all about him and it "knows" what it needed to CURE him. (we may not be able to supply it with what it asks for) but the computer collects& COUNTS every stem cell and what products are needed for transplant. Then when he is ready for transplant it will supply whatever he needs at an EXACT amount and if there is any stress it knows either to slow down or speed up or introduce medicine for whatever organ that may stray from "baseline" They have informed us that this type of computer exists only at Yale.. The Doctors are among the best in the world so we have to put our trust in a computer and these fine doctors.This procedure is to happen later in march. he will undergo the typical chemo to stimulate production of stem cells and then once completed he will receive by computer the high dose chemo and will "know" when  the maximum amount of myeloma cells are killed. Without a sibling match the cancer will return sooner but his superlative response to Velcade/thal/dex.could be used again when he comes out of remission. also revlimid and other drugs are still available to him. Cancer sucks.!!

 

On 2/26/2008 zazu1234 wrote:

Well things never stop, or even slow down... cancer never sleeps !! Cancer seems to have a mission and a scary one. My brother has been on velcade, dex,thalidimide treatment, His cancer was extremely vigourous as DX in October and by December  his myeloma load was 90% with IGg level of 9500 these numbers are off the charts and we are not sure how he survived to the first of the year. Doctors only said "the human body is a miracle" well I guess it is !! After only 12 treatments on Vel-dex-thal his numbers came down to 10%myeloma load and IGg is at 985 Now they want to do a stem cell transplant ASAP.My brother is terrified and after been given a few months of survival in october to stem cell transplant in march we may attribute this to Prayer,God and support in a positive way.People speak of "being positive" I understand now what that means. After being run through a wringer you just seem to find some superpower striength!!! and never quit !  miracles really do happen they really do !! After living my life (48 years) and becoming quite successful I now realize that while climbing this ladder of success that the ladder was against the wrong wall. I love my brother and I would "trade" all my posessions for just one more day with him.Life is a gift yes a gift .We should not have to have to have extreme grief  to see this but sometimes it just works that way. I have learned so much in such a short time, Too bad I had to learn it this way.Love transcends it guides and provides Love each other as if it were the last time you will see them....... Love.

so sorry for your brother I will keep him in my prayers, My husband was just diagnosed and we are waiting for his doctor to figure out the best course of action. His was found on a routine health exam so he is asymptomatic so far. The waiting seems endless for an appointment at the University of Michigan. I would like to hear all thoughts or treatments people have had to get a better grip on this. We are still in shock. Thanks!

 

I am

 Alice I wrote you a private reply. MMS

On 2/27/2008 ALICES wrote:

 

On 2/26/2008 zazu1234 wrote:

Well things never stop, or even slow down... cancer never sleeps !! Cancer seems to have a mission and a scary one. My brother has been on velcade, dex,thalidimide treatment, His cancer was extremely vigourous as DX in October and by December  his myeloma load was 90% with IGg level of 9500 these numbers are off the charts and we are not sure how he survived to the first of the year. Doctors only said "the human body is a miracle" well I guess it is !! After only 12 treatments on Vel-dex-thal his numbers came down to 10%myeloma load and IGg is at 985 Now they want to do a stem cell transplant ASAP.My brother is terrified and after been given a few months of survival in october to stem cell transplant in march we may attribute this to Prayer,God and support in a positive way.People speak of "being positive" I understand now what that means. After being run through a wringer you just seem to find some superpower striength!!! and never quit !  miracles really do happen they really do !! After living my life (48 years) and becoming quite successful I now realize that while climbing this ladder of success that the ladder was against the wrong wall. I love my brother and I would "trade" all my posessions for just one more day with him.Life is a gift yes a gift .We should not have to have to have extreme grief  to see this but sometimes it just works that way. I have learned so much in such a short time, Too bad I had to learn it this way.Love transcends it guides and provides Love each other as if it were the last time you will see them....... Love.

so sorry for your brother I will keep him in my prayers, My husband was just diagnosed and we are waiting for his doctor to figure out the best course of action. His was found on a routine health exam so he is asymptomatic so far. The waiting seems endless for an appointment at the University of Michigan. I would like to hear all thoughts or treatments people have had to get a better grip on this. We are still in shock. Thanks!

 

I am

 

 

On 2/27/2008 zazu1234 wrote:

Well Kevin "tandem" Tandem could be different things in our case "tandem" means transplant of stem cells from himself and a sibling together His cancer is so vigorous that Yale believes it will return quickly therefore sibling stem cells could identify Myeloma and destroy it. The problem is that I am not a HLA match and we have only a sister who is being typed at this time. We are hopeful. The chance of HLA match is only 25%. The most amazing thing is at Yale. They have a super computer this computer has "linked" with my brother it was connected by a IV.his breathing was connected and his urine was collected It even used a special camera to watch his heart flow and many other functions.......after about 1/2 hour it learned all about him and it "knows" what it needed to CURE him. (we may not be able to supply it with what it asks for) but the computer collects& COUNTS every stem cell and what products are needed for transplant. Then when he is ready for transplant it will supply whatever he needs at an EXACT amount and if there is any stress it knows either to slow down or speed up or introduce medicine for whatever organ that may stray from "baseline" They have informed us that this type of computer exists only at Yale.. The Doctors are among the best in the world so we have to put our trust in a computer and these fine doctors.This procedure is to happen later in march. he will undergo the typical chemo to stimulate production of stem cells and then once completed he will receive by computer the high dose chemo and will "know" when  the maximum amount of myeloma cells are killed. Without a sibling match the cancer will return sooner but his superlative response to Velcade/thal/dex.could be used again when he comes out of remission. also revlimid and other drugs are still available to him. Cancer sucks.!!

Good Evening Zazu;

Tandem only means what you've described above: Auto and Allo together! From my research, pretty impressive concept, you get the benefit of both transplants and halve the side effects. I would like to correct you on an oversight: You may be an HLA match of a "D", however your sister may be even lower! You might end up going to a "bank" to find a closer match. It's not just siblings that can donate. But on the bright side, what was once told to me is incorrect, that they have to enter the bone to harvest stem cells. In adults, stems can be taken from the blood. A LOT LESS PAINFUL!

I'm no Dr. (thank goodness) but from what I recall of your previous posts I agree with the Yale Drs. of the quick return of the MM. And they have drugs available to fight off the Graft VS. Host. Go in there positive, it sounds like they have his tx. pretty well figured out!

Regarding the computer, I'm somewhat old school, but I would love to see how this thing operates. Sounds to me like a diagnostic machine a mechanic would plug your car into. The marvels of modern science. Sure beats reading tea leaves.

Stay positive and informed;

Kevin

 

I am so excited for you about the monitoring process. I feel this just might be the direction needed to save or prolong his life. Unfortunately I lost my husband to this ugly disease in October. With a monitoring system such as this I have to wonder if he would still be with me now. I think they are finally going in the right direction now. My husband did have a transplant of his own cells but it was unsuccessful. It was done in March of last year. His 100 day biopsy did show a decrease from 31 per cent to 17 per cent but that was  very short lived. In September he was up to 90 per cent plus and when he was admitted to the hospital for a radical chemo treatment he was at 100 per cent. The sad part is the chemo was working but everything else was destroyed in the process. I have to wonder if this monitoring system were available things may have been different. I wish you the best of luck with this new process. It is my hope that this works. I hope in my lifetime a cure will happen. Too late for my husband but  not for others. From each case of mm I am sure more and more knowledge is acquired for the cure. Does he have the missing 13Q chromosone? My prayers are with you.

Linda

hello Linda I am So very sorry for your loss. In our case my brother had chromosome 13 and 11 deletions. We have discovered that velcade has the ability to provide almost the same response as a patient with no chromosome abnormalities. Like Keven mentioned in the previous post the match may be in the bone marrow registry. This is best for my brother because a sibling or close match could identify the myeloma and structure an attack against the cancer. HLA match is best to help with the posability of graft vs host and this is life threatening in itself. Any other match may outweigh GVHD because ALLO will be short lived.The super computer at Yale must be like some kind of monitoring , administering.,controling device and it is a good tool to do the most damage to the cancer and supply the stem cells at a very controled level. No matter what multiple myeloma is a very serious cancer and at this time unstoppable......Some day Nano technology will be the cure for cancer all together as man could build micro machines that could be injected into the body and these man made cells could be programmed to Kill certain cells !! or they could be programmed to instruct the body to identify cancer and launch a attack against it. This may sound like a dream but it is being researched at this time.Cancer is not a smart disease the only way it can flurish is because it is unidentified by the bodys ammune system and the body "Thinks" it belongs there, form that point on the body makes (in this case) monoclonal cells exponentally .once the body is "duped" the most powerful defense system  we have is used against us. Cancer Sucks

Good Evening Zazu;

To begin with, I am impressed! And if you knew me, you would certainly take that as a compliment! Because I don't sat that too often. But from the above posting you have obviously educated yourself! Good job, man.

"We have discovered that velcade has the ability to provide almost the same response as a patient with no chromosome abnormalities."

Now you have to explain this to me. Let me educate myself. Give me the background on this statement. I need info so I can speak to my Dr. about this.

Stay positive and informed;

Kevin